Impatience is Driving Me Crazy

We still know nothing new regarding Jess. A nurse called earlier in the week and indicated they hadn't scheduled the additional labwork yet because they were still trying to get authorization from the insurance company. Once they had the pre-certification approved, they would call and get him in. Argh. I've also been waiting for another callback from the doctor so I can ask him some additional questions about Jesse's MRI; he's tried calling a couple times, but we haven't been home. Again... argh.

I'm a learner, a seeker, a searcher. I fear the unknown. Since I don't handle fear well, I like to educate myself as best I can so the unknown is no longer unknown. I've spent countless days into the wee hours of the morning pouring over medical, support group, med school, and reference websites trying to find something, anything, that might be a match for Jesse's symptoms. I've read about neurological disorders, metabolic disorders, seizure disorders, neuromuscular disorders, autoimmune disorders... it is simply mind-boggling to see how many "things" can go wrong with this fragile treasure we call life. What is incredibly sad, and somewhat fearful, to me is that there are so many illnesses/diseases/disorders that have poor outcomes; in many cases, life is shortened dramatically and many children die when they are very young.

Don't get me wrong, I don't really think that Jess has one of the terminal problems I've read about. Seeing all that could go wrong with the body just really got me thinking about the folks that are parents to such sick little kids and how heartbreaking it must be for them. In the miracle of the human body, it is amazing to me that something as tiny a missing amino acid or an extra protein group can cause such devastation.

I suppose, at this point, ignorance is bliss (in a way) and I am simply thankful for each day with him. I tell myself that perhaps knowing what is wrong with him may be worse than not knowing, as that is what I sometimes do when I face the unknown. Yet, I continue my search with optimistic hope because... well, because that is just what I do to hang on to my sanity for a bit longer.